Recently I saw a post on social media that said something like “I apologize if I was ever the toxic person in your life, but I’m working on becoming a better version of myself” and it just hit me hard. Looking back at my life, I realize I was that toxic person. I wasn’t hurting the people around me, at least I don’t think so, I just had a lot of negative energy. I realize now, I was carrying the enormous weight of emotional trauma and insecurities from my youth that I wasn’t fully mature enough to process or manage. It had become a quagmire of pent up negativity that I often seemed to blame others for and let it dim my light. The funny thing was, I preached positivity and spoke often about the need for it and the importance of it, but I couldn’t muster it in my own psyche. My well was dry.
That post made me realize how much things have changed in the four years since my aneurysm has ruptured. My perspective on life has shifted. And, while, one would expect such a change to occur after a near death experience, I think it goes deeper than than that. I feel this glow from inside of me that wasn’t there before…or rather, it was, but it was clouded by a window covered in soot. The light couldn’t get out. In the past, I think my light gave up trying. I was stressed, tired, angry…life got in the way. I gave up. And I let that happen.
It’s no surprise that brain damage changes a personality. Sometimes it’s for the better, sometimes it’s for the worse. For me it has been this metamorphosis of balance and peace that I never thought possible. My mother used to always tell me that I was extremely high strung. I think her exact words were that I was “wrapped around the axle”. I have always been a Type-A personality and never been able to truly relax. I had no idea about that concept. I used to say that I never knew how to have fun. When we would go on vacation, I would have a folder with the itinerary of each day planned out. It wasn’t specific down to times, unless there were tours, but each day was scheduled. Now, everything is different. We went on vacation last year and my husband asked what we were doing one day and I said “whatever we wanted”. I’ve stopped planning my life and started living it.
It’s been no secret that I have had a lot of medical issues following my rupture. My challenges are significant at times. Better than a lot of survivors, worse than others. Life isn’t easy. It isn’t what I wanted. There are days I have temper tantrums. There are days I ask God why he saved my life. But when it truly comes down to it, I’m grateful for my aneurysm rupturing. Yep. You read that right. It doesn’t seem like something anyone with any sense would say. But here I am saying it (although some that know me may say I don’t have any sense, but that’s another story entirely). My reasoning is simple…I’m no longer that toxic person. Oh, don’t get me wrong, I am still passionate about certain things…politics, sports, social justice issues. And I’m still going to get all fired up about those things, but I hope that my positivity outshines the negativity that I feel about the world sometimes.
I’ve learned to deal with the issues of the past and truly forgive, not just lip service, but true forgiveness. I’ve even learned to be a little easier on myself…not much, but a little. I look at the world realistically with the positivity of the future…with the beauty of each moment that exists right in that space in time. It may not be perfect, but it’s what we have and I promise you there is something beautiful right where you are standing.
So if I was ever that toxic person in your life, I apologize…I’m working on becoming a better version of myself…someone I like a lot better.
Trauma never really goes away, you just learn to live with it. Some days it feels like I’m living in a tense hostage situation and other days I feel like it’s simply a roommate I navigate life with, dancing through a too small space to avoid bumping into each other. My four year anniversary of my ruptured aneurysm is today, April 14, and I don’t understand how it can be both simultaneously ALREADY four years and ONLY four years. Time and trauma are funny that way.
It took me a long time to reconcile the fact that I was still alive and that I deserved to be alive. And to be honest, some days that’s still a struggle. There are days when I don’t want to be alive either. Those days have become fewer and my resolve has become stronger, even as we have discovered more problems. I believe I survived for a reason and I intend to make the most of this second chance. I struggled so much at the beginning of all of this after losing my career and trying to figure out what I was supposed to do with my life now. How do you suddenly pretend that life didn’t exist? I knew that I wanted to help the aneurysm community so that’s what I have set out to do.
I started my blog as part of my own recovery, but also to help other survivors and to help educate others to understand what we go through, what risk factors to look for, and how to help the community. I wanted to do more though…so I wrote a few articles for some other publications. I’ll admit, that was exhilarating to me. I love to write and it helps my healing. There was still room for more.
This year, for the first time, I participated in Advocacy Day at the Capitol. I had planned to do it two years ago, but it was canceled because of the pandemic. I was scheduled to meet with members of Congress from my state to discuss support for Ellie’s Law and share my story about my aneurysm. I have shared my story so frequently that I thought it would be easy, and while it was easy, it was mentally exhausting. It sapped all of my energy. The event was both terrifying and the most fulfilling thing I have ever done. It made me feel more alive than I have in years. I realized, without question, that this is what I have been called to do.
I am already working on plans for smaller events locally to educate and raise awareness and I know it won’t be easy, but nothing worth it ever is. I was saved for a reason and on this anniversary, I am not going to question why I am alive. Today I am remembering that day I woke up from my coma and heard those words whispered in my ear as I sat alone in my hospital room…”Be still and know that I am God” and I am living with purpose and gratitude.
Be well, my friends. Go shine your light on this world.
The changing seasons has always been one of my favorite things. As I’ve moved around the country for my career, it was one of the things I frequently complained about missing since we were always in the south. Autumn is my favorite and as much as I love the south, it just couldn’t compete with fall back home. I love everything about it from the leaves to apple picking to the football. When we decided to return back “home” to the north nearly a decade ago for my job, one of the biggest things on my “PRO” list was the changing seasons. I was excited to finally have all four seasons again, even if it meant snow in the winter…my least favorite.
Those first few years were wonderful. It was as though I appreciated the beauty of the seasons with a fresh set of eyes. Even winter was wonderful and Christmas with snow was magical. I forgot what that was like. There were still the grey skies in the winter to contend with and the mild seasonal depression that is often associated with it, but overall, I had this new found appreciation for the beauty of nature with each passing phase.
I have always suffered from weather related migraines. So when we would get storms or changes in pressure, I would get headaches. My headaches had pretty much disappeared when I left the state the first time, 20 years prior. I had a few bad migraines over the years, but nothing that required any treatment. Unfortunately, when I moved back, I noticed an uptick in the frequency in headaches. Between weather patterns and a demanding career, everything started to change. I started joking that the state was trying to kill me…it turned out to be not such a funny joke.
By the time the aneurysm happened, I was having migraines multiple times a month, lasting 3-4 days at a time and they were made worse around the seasonal changes. Since the aneurysm, I dread the seasons changing. I especially feel this weight on me as autumn approaches and the sun sets earlier. When darkness falls at 5:00 and days are filled with grey skies and the sun is rarely seen, my mood becomes sullen, my headaches become more intense than usual, and I don’t want to leave the bed. Even with Spring and Summer, the changing of the seasons leads to intense pressure. The headaches are much worse and there is nothing to do but wait it out and let nature run the course and stabilize.
I live for those days when the sun is shining and the sky is blue when I can get out with my camera and try to ignore my headache even for the briefest of moments to find some peace and normalcy. I’m not the only survivor who tries to find a sense of normal in these moments. My friend, Mike, whom I met through my advocacy and whose aneurysm ruptured the day before mine, has his own approach.
For him, like me, the change to winter with the grey skies, biting cold winds, and the starkness of the snow can cause the doldrums. He tries to find ways to remain happy and returned to downhill skiing to embrace the season. He said it was scary for him because, as a survivor, he was afraid to fall and hit his head. Mike overcame it by acknowledging that survivors have already overcome such difficulty and he challenged himself to do it for all of those survivors who can’t physically do it. He told me that it was hard and extremely tiring, but it was very special when he finished.
Ultimately, for Mike, the challenge is to be in the moment and recognize each season’s beauty and feel lucky to be around to witness them. But isn’t that really the lesson for all of us? We survivors have known that our lives can change in an instant. We were given a crash course in perspective. But honestly, without sounding preachy, the last two years have taught us all that life can change in a moment. You can lose someone in the blink of an eye. I hope we each take a moment to appreciate those beautiful colors that nature gives us in that sunset, the peaceful quiet of a snowfall, the sound of the rain as it hits the roof. I hope you’ll mend fences and love each other because life is too short and it is taken away too suddenly.
April 14 has new meaning to me now. Each year, as it approaches, I am reminded of how my life has been forever changed and how I am beyond blessed. Since my aneurysm ruptured on April 14, 2018, my life has changed in ways that I could never have imagined. Each year since has brought new challenges, frustrations, fears, anger, growth, and promise. And through it all, I have somehow managed to find a peace that was missing in my life prior to this disaster.
I struggled with defining myself after being declared unable to work. Who was I if I wasn’t an IT Leader in Supply Chain Process Improvement? Who was I if it didn’t say “Project Manager” after my name? It was an obstacle that was impossible to leap. I couldn’t just be someone else…even when my brain refused to do the job anymore. I had a list of medical problems that seemed to grow daily, and yet the definition of who I was is the thing that bothered me most.
I knew who I wanted to be. I wanted to help others. I wanted to walk back into the flames carrying water for others who needed the help. But when I looked in the mirror, I didn’t believe that I had the capacity to help others. I wasn’t strong enough, knowledgeable enough, and where would I even start? But even before my aneurysm, I had always talked about feeling as though there was something missing in my life. I wanted to help people. I wanted that to be my life’s work. I started tweeting about awareness. I started sharing statistics. And finally, some amazing people jumped into my life and asked if I was ready for advocacy.
I started writing my blog to share my experiences with my recovery because, while every recovery is different, sometimes survivors need to know they are not alone. Sometimes, survivors need to see that a symptom might match theirs and maybe their care team hasn’t looked at it the way mine has…or maybe they just want to know that other survivors have bad days and cuss and throw things too (believe me, I do). I’ve also been extremely blessed to write for a few publications to share my perspective to get my voice out there even further. And I have been honored to help a few families whose loved ones were in the hospital following an event when they have needed support. That has been an extremely humbling experience to be trusted with their hearts as they navigate this new journey.
I may not be changing the world, but with each action of advocacy, I realize that my heart is full and I have found a peace that I never had during my career. Oh, don’t get me wrong, I still struggle and have my moments of wishing for my “old” life, but that wish is nothing more than longing for a life that isn’t filled with the complications of daily migraines, seizures, hypothalamus dysfunction, and whatever other medical problems they want to throw at me. There are moments of weakness when I just want it all to go away…I am human, after all. But when I really sit and think about it, three years ago, on April 14, 2018, I was not only given a miracle of a second chance at life, I was given a miracle of happiness.
I have been absent lately. I haven’t published for awhile and several folks have reached out to me wondering where I have been. Honestly, the last few months have been rough for several reasons, but one thing I have learned is that sometimes you just need to step away and take care of yourself. For the first time, I listened to my body…and my soul…and I took some time for me. Sometimes life hits you hard and amidst it all you need to listen to the voice in your head that’s telling you to slow down. But I’m getting myself back into the mode of fighting for survivors and sharing my story.
It was February 21, 2020. I’ll never forget that date. My mom was lying in a hospital bed at home and we knew she didn’t have long. I was headed up to be by her side. We had already said our goodbyes privately by phone earlier in the week and she left me a voicemail so that I would always have her voice to listen to on tough days. I woke up that morning and steeled myself for the long days ahead. I knew this was going to be draining…physically and emotionally, but I needed to be there for my dad, my siblings, and her.
We left the house and stopped at Chik-fil-A to grab some breakfast before driving the three hours “home.” We had already been through this journey with my mother-in-law years before my aneurysm, but that was unexpected. My mom had fought lung cancer valiantly for two years and took a quick turn just in the last month. When we got to the restaurant, I stood in line and noticed I was feeling…off. My legs felt like concrete and rubber at the same time. My husband had to prod me forward to the counter to order. As I began to order, the words wouldn’t come out and things were slow and seemed to slur from my mouth. I just looked up at my husband terrified. He looked at me questioningly and ordered for me. The unspoken thought between us was that my brain was overwhelmed with the grief and stress that was coming. Add stress to brain trauma and things get even more challenging.
I recovered quickly and walked to a booth and sat down. Our food was brought over and we ate in relative silence. I sat staring out the window over my husband’s shoulder, watching the steady stream of cars go past. In a blink of an eye, he was a mile away as the wall behind him pushed away and his voice trailed off into a tunnel. Suddenly sound was distorted, I was shaking and nauseous, and I heard a voice come out of my body that was unrecognizable say “honey, honey, there’s something wrong” and in that moment, my head dropped back and I lost consciousness.
I regained consciousness in what felt like hours later, but what was actually mere seconds. My husband was asking if I was okay. My hands were still shaking pretty badly, but everything else was returning to normal. My vision seemed restored. My hearing was back to normal. I was no longer dizzy or nauseous, although I had no desire to finish my breakfast. My husband asked if I could walk and get to the car. I told him I could and I took his arm for stability. He got me loaded into the car and he got into the driver’s seat and he asked “where do you want to go?” I gave him a weird look and said “mom’s”…as if there was any other option. He looked at me as if I had two heads and said “we’re going to a hospital…which one? I’m sorry but you have to go get a brain scan”. I was furious…muttering under my breath like a teenager angry with a parent. I sat there in the passenger seat with my arms folded across my chest muttering under my breath something along the lines of “you and your damn brain scans.”
We arrived at urgent care and they took me back immediately because of my history. They did a brain scan before even getting me into a room. The scan came back normal but blood work showed an extremely low level of potassium. They were concerned about a possible heart attack and transported me by ambulance to a hospital for care. I kept asking if this is what caused the episode in the morning and everyone just kept saying it was concerning. After the entire day, several pills, and 4 bags of potassium infusions, they sent me home with orders to follow up with my family doctor. I ended up on prescription potassium pills because no matter what we did, my potassium just wouldn’t stay in the normal range.
I continued to have strange feelings. It seemed to be monthly that I’d have an episode like the one that day at Chik-fil-A. In between those big events, I’d have other issues like feeling I was floating as I was walking or, even more strangely, suddenly feeling like I didn’t fit inside the space I was occupying. I had mentioned to the doctors early on in my recovery about some of the unusual feelings but I never really pressed it and it was just assumed that this was just part of my recovery. So often, I kept these things to myself because I felt like a hypochondriac. It always seems like there is “one more thing” and I hated feeling like I was crazy…or that they thought I was. However, as time went, all of these things started to bother me more. I began to ask more questions. I began to press for answers.
When I pushed on my neurology team, they thought it might be my heart and wanted me to talk to my family doctor. But as they heard more of my symptoms, they decided the best course of action was to send me to an epilepsy specialist for evaluation and possible EEG. My epilepsy team worked quickly to find an answer. I was scheduled quickly for a five-day video EEG stay in the hospital. It’s funny that the moment it was scheduled, a wave of fear washed over me. Perhaps ignorance really was bliss. Maybe I was better off just staying completely unaware of any problems.
Since my episodes seemed to be monthly, my doctors weren’t really convinced that we would catch anything on the EEG. We would need to be extremely lucky to catch that monthly occurrence, but we were going to try. We were all just hopeful to get some answers so that I could get the treatment needed to improve my life.
When I arrived at the hospital, they got me settled into my room and began to connect me to what felt like thousands of wires. I was beginning to understand why Frankenstein was so angry. Because I was in the epilepsy unit, I couldn’t get up on my own. I was considered a fall risk because of the seizures so anytime I needed to go to the bathroom I had to call for a nurse. Anytime I wanted to sit in the chair, I had to call for a nurse. I couldn’t even let my husband help me. It had to be the nurse.
Once I was all hooked up and the cameras were active, it was fascinating to see how the EEG reacted to the simplest tasks like me chewing, laughing, smiling, or rolling my eyes. Every task was captured on the monitor. Each motion was emblazoned on the screen and captured for the doctors to review. It was fascinating and creepy. I felt like a baby who just discovered their toes. I kept making faces and talking and moving so that I could watch the machine react. I’m sure the technicians watching were wondering what was wrong with me. I’m apparently just easily entertained. The newness eventually wore off and I settled in and watched tv and played games on my phone to pass the time. It was going to be a long five days.
That first morning, the doctor came in and told me that they didn’t capture anything but not to give up hope…we were just at the beginning. Somehow that didn’t reassure me. I wasn’t feeling very optimistic. The days were long and boring. I couldn’t move around. I couldn’t have visitors because of COVID-19 so it was just me and my husband. He was able to work. I was bored out of my mind. The doctors decided to try to encourage seizures through sleep deprivation so they asked me to stay up as late as possible, but at least until 2:00 AM and no napping during the day. So day 2 became an even longer test of my abilities to keep myself entertained.
I managed to stay up until after 3:00 AM before finally falling asleep and, as is always the case in any hospital stay, I was up early because of the constant barrage of interruptions. When the resident came in that morning he told me that although I didn’t have a seizure, I did have a “pre-seizure”. He told me that the doctor would be in later to discuss. I was so excited because I felt like maybe we were finally on the verge of getting answers and that’s all I wanted.
When the doctor arrived with an entourage of students, I mentioned what the resident said that morning and it turns out that isn’t really “a thing” but apparently what he meant was that there were some indications that a seizure was starting but never fully formed. They wanted to try another night of no sleep. They wanted me to go longer if possible…which meant my exhaustion from the night before was only going to get worse. I understood the point of this, but it certainly wasn’t making me happy. I was becoming irritable and annoyed. I didn’t like being a guinea pig anymore. I didn’t care if we got answers. I just wanted sleep and to be left alone. But I signed up for this.
That night I pushed myself to stay up later. As the hours ticked slowly by, my exhaustion hung in the air. I could barely keep my eyes open after the night before and staying awake all day. The neuro fatigue was brutal and I finally collapsed. I have no idea what time I finally gave up, I just knew I couldn’t go anymore. I swear I only slept for minutes before early morning came and my next neuro check.
The medical team began to trickle in and the doctor sat at the foot of my bed. His easy bedside manner put me at ease as we walked through a battery of questions. He wanted to understand my symptoms in the past. He pressed for every detail that we could remember. He explained that they have not been able to catch an actual seizure while I was there. They were able to catch several blips that could indicate a seizure may be about to form, but never did. But, most importantly, everything I have been telling him and other doctors about my events, indicate frontal lobe seizures and it correlates with the location of my aneurysm. He wanted to try me on seizure medicine to see if my symptoms improved. Basically, it was our best opportunity to prove our suspicions without keeping me in the hospital indefinitely.
He also diagnosed me with Alice In Wonderland Syndrome (AIWS), which I swear he made up and was making fun of me…did he think I had a Cheshire Cat too? As I sat there waiting for the punch line, he explained. Essentially, it is a condition where your visual perception is altered from reality. At first none of this sounded familiar, but as we continued to think more about it, pieces started to fall into place. My husband remembered that while I was recovering in ICU, I asked multiple times if I was in a “normal sized” bed because it seemed like I was too big for it. There were also times when I would walk into a room in our house and feel like the ceiling was coming down on me. Or that I was floating when I was walking. Or that the walls would push a mile away. All of these were things I never mentioned to doctors because they seemed silly…or crazy. I was so afraid that the doctors would look at my never ending list of ailments and think I had to be making this stuff up. So I suffered silently. He said that the seizure medicine should help these episodes too. He warned me to be patient as it often takes time to get the right dosage for seizure management, but we’d get there.
I was near tears. It may have been the exhaustion, but it finally felt like maybe we were getting some answers. On the flip side, that also meant that there were more problems. It was something I continued to struggle with…before my aneurysm, I had no health issues. I took no medications. Since that fateful day, I have typed lists of medications and illnesses because there are now too many to remember. It’s amazing how drastically things can change in an instant.
My migraines started in my early teen years. With me, they definitely seemed to be hereditary. My dad had them, as did his mother, his brother, and my cousins. I remember when I was little my dad would literally stand and bang his head on the wall when his got so bad. I never understood what he hoped to accomplish with that, but he did it. Mine were fairly tolerable and less frequent than my dad’s. As I got older, they got more intense. I remember my senior year in college, they had gotten somewhat debilitating. I was an English major with a minor in writing so I spent a lot of time writing papers that last year. I would sit at the computer, in tears, with a trash can on my lap, repeatedly taking breaks to vomit, then going back to typing my papers. Looking back, that was a miserable time, and really unhygienic.
I had migraines with an aura. Typically, before the pain would strike, I’d see a haze of color in my peripheral vision. It was usually purples and pinks, with traces of blue. Sometimes it was as if my horizontal hold would go out in my eyes and they would almost “flip down a page” like the world’s worst viewfinder. My headaches would send me cowering in a dark room, made as cold as possible with fans and air conditioning, where I could take refuge until it passed. I would lay in bed, in this cold room, buried under a pile of blankets, with the heating pad wrapped around my head, Vick’s on my forehead and under my nose, and a hot damp washcloth draped across my eyes. When the first injectable migraine medicine came on the market, I was beyond excited. My doctor was nervous for me to try it because I had a known heart condition and we had no idea how it would work. He wanted me in his office for my first injection. So there I was, in his office the next time a migraine struck, and he gave me the injection. I laid back on the table and waited. Twenty minutes passed and it felt like my throat was closing off. Apparently, that was a “normal” reaction. I’d rather live with the headaches!
My headaches got even worse after I got married…wait…there’s a joke in there somewhere, I’m sure of it. Anyway, it got to the point that my husband was taking me to the ER almost monthly for a headache cocktail. The hospital was beginning to suspect that I was a drug addict looking for a fix. They told my husband that we needed to find a better solution for my migraines. We went up to the Cleveland Clinic for an appointment with a neurologist. I don’t remember if they had done any scans of my brain or not, but I do remember they had put me on an anti-seizure medicine to prevent headaches. The doctor told us that migraines are cyclical and feed off of each other and that we just needed to break the cycle. After about six months, they took me off of the medication. Shortly after that, we moved from Ohio to Knoxville, Tennessee. My migraines were gone. For the next 15 years, I lived nearly migraine free. It was a delightful existence with only one migraine per year. In the grand scheme of things, that was an existence I could celebrate!
We had moved from Tennessee to south Florida to Dallas, Texas. Change of location didn’t seem to impact my headaches. I got terrible sinus headaches with storms, but they weren’t migraines. Weather patterns always seemed to play a role. By this point, I had learned to recognize the auras and would take a couple of over the counter migraine pills and I’d never get a full blown headache. I had learned to manage the situation and was rather pleased that I finally had a solution. Maybe I had grown out of the headaches. My dad had stopped getting his too, but they suspected that his stopped because of blood pressure medicine…another curse that runs on his side of the family.
In 2012, we moved back to Ohio and almost instantly, my migraines came roaring back to life. It felt has if they had been in hibernation this whole time and simply needed to recognize the landscape before they would spring back to life to torment me. I worked a stressful job as a project manager and the hours were long. I assumed that was the cause of the return. My doctor told me to manage the stress better. Oh, okay, that is a completely reasonable request…let me just add “relax” to my to do list.
The headaches continued getting worse until I finally went to see a neurologist locally. He suggested a different anti-seizure medicine from what I had used years before and for months, we played with dosing. Finally, we had gotten to the point where I was getting only 5-7 per month. I was actually pretty happy with that…it’s amazing how low your expectations drop when you feel like hell. The doctor wasn’t happy with the results and thought we could do better so he increased the medicine one last time. I say final time because that level of medication seemed to be a tipping point for me and I became suicidal. Backing off the dose and returning me to a lower dose didn’t help. The medication and my body were no longer compatible. We tried several other drugs in that class of medication to no avail. They all had the same effect.
As the years passed, the headaches continued to get worse…more frequent, more intense. We all know how this story turns out so I won’t bore you with a retelling of the day my brain tried to kill me. Instead, I want to share how this story has progressed. My brain started bleeding on March 13, 2018. It ruptured on April 14, 2018. And I have literally had a migraine every single day since that March day. I’ve had a headache for 912 days straight…I’m not counting or anything. There are very few things that I would like to do for 912 days straight. I can say with certainty that living with a migraine is NOT on that list. But, here we are.
This journey has been an interesting one and I am beyond grateful to have an amazing care team at the Cleveland Clinic who has worked with me through every experiment we have tried to find the right combination of drugs. We have tried old drugs, brand new drugs, drugs for blood pressure, anxiety, muscle relaxers. Oral drugs. Injectable drugs. Diet changes. Activities like meditation. And if I come to them with a natural remedy, they’ll investigate to make sure it isn’t going to interfere with any medications or with my brain. I cannot stress this enough…it is so important to find a doctor who will listen to you. One who will fight to find answers. That’s what I have found and it’s been a game changer for me. There was a moment where they wanted to try me on a different blood pressure medication and my BP skyrocketed. They were extremely quick to make adjustments and return me to my old medication, noting that some meds just don’t work well with some people.
As I said before, we’ve tried it all. We’ve tried brand new drugs to the market, which normally makes me nervous. I don’t like being the first to try things (I realize others tried them during the trials but still). But this ongoing headache has been so annoying that I’d try just about anything. Oh…meth works for headaches? Okay, so maybe I won’t try ANYTHING. Anyway, I had been doing Botox for a while, but it wasn’t really giving me any relief so I stopped that and started using a monthly injection of a new drug. It seemed to work great. I was getting almost 15 days per month that I would call “headache free” despite still having a dull, nagging pain. At least the headache was a 1-2 on the pain scale, rather than a 7-9. Then on month 5, the injection completely stopped working. We decided to try a different injection. This one seems to be holding steady after 5 months. I’m getting about 15-20 days of “headache free” days during some months. Some months are worse than others. I also have a selection of abortive medications for when I get breakthrough headaches. Depending on the severity, I can choose from any of 5 drugs to help me cope and get relief. It’s not ideal, but neither is living with a migraine for over 900 days straight.
One thing that has surprised me a great deal is that it was recommended that I try THC for my anxiety, PTSD, and chronic pain. So, I got my medical marijuana card and spoke with the pharmacist on site at the dispensary. Several combinations were recommended when I got my license in 2019. I tried multiple things…smoking, tinctures, gummies…but got no relief for the headaches. It did provide relief for the anxiety and the PTSD though. This year, when I went to the doctor to renew my card, we talked through how my pain was. He wasn’t happy that I was on so many medications. He told me the point is to get me away from pills…especially pain pills. He suggested I try transdermal THC patches. So, when I went to the dispensary, I got a small pack to try. Later that day, I felt the migraine getting worse and I asked my husband to put one at the base of my neck, between my shoulder blades. I could not believe it that I was headache free within 30 minutes. It wasn’t a 1-2. It was gone. My mind was blown. Let me tell you, I went back to the dispensary and bought a ton more! Some days they work, other days, not so much. In the last month since I’ve started this regimen, I’ve probably had 7-10 days completely headache free. I don’t automatically put on a patch…I wait until the headache really starts because I dream of a day when I won’t actually have a headache and I don’t want to waste a patch if I don’t need one…ever the optimist. These patches have truly changed my life for the better. Days without headaches? Is this what the rest of you feel like every day? Damn y’all are living the good life.
We still notice that weather plays a role in my headaches. The barometric pressure changes are easy to pinpoint. I can tell you within an hour when it’s going to start raining…it’s a great party trick. This week, we had tornadoes on Labor Day and I truly thought I was dying. I curled up in the fetal position and cried. It was hell. Nothing helped. I was willing to let the tornado take me to Oz so I could ask the wizard for a new head. Living in Ohio definitely doesn’t seem to agree with me.
My 30 year journey with migraines has taken a few detours that I never expected. I went down some pretty terrifying roads and totally ignored the “Road Closed” sign two years ago. This has been an exercise in patience and sometimes frustration. But like I said last week…there’s always someone worse off than you. There’s someone out there who would love to have your worst day. No matter what, I am going to keep pressing forward in hopes that I’ll once again have months where I have no headaches. I’m not aiming for hours, or days. I want to count the months. I’m greedy that way. And I’ll get it someday.
I never thought much about mental health until my aneurysm ruptured. I knew there was a stigma around talking about it openly, although I didn’t understand that attitude. I had used counselors before when I sought treatment for an eating disorder, but I hadn’t thought about that in more than two decades.
It didn’t take long into my recovery before I noticed my mental state was different. When I left the hospital two weeks after my aneurysm ruptured, we knew there was a chance that it could rupture again. The shape of the aneurysm prevented the surgeon from putting the platinum coils clear to the tip of the bulge. We were told that I would either need another surgery to put a stent across the neck or we could monitor it every 6 months through a procedure called an angiogram. The surgeon said that if left alone, it could potentially rupture again, but that could be 4 months from now…or 40 years…or never. That information planted a seed of fear, right next to the seed that was planted unknowingly the day my brain exploded.
As I began my recovery at home, I tried to ignore the nagging thoughts about another rupture, but every headache sent me into a panic. I’d never had an anxiety attack before, but it became yet another companion in my new life. I had flashbacks of the day of the rupture. I felt the hot knife that seemed to pierce through the top of my head that day. It felt real and it terrified me. These flashbacks hit unexpectedly and hard. I would cry, I was irritable, and I’d pace the house at night waiting for death to come for me. I fretted incessantly about why I was alive when so many others had died. I struggled to understand my new world.
I remember my first trip out to a restaurant with my husband and needing to use the restroom. I got to the door of the bathroom, but I couldn’t go in. There was a knot in my stomach. I broke out into a cold sweat. A sense of dread overwhelmed me. I went back to the table and told him that I wasn’t feeling well. We quickly left the restaurant and as soon as we got to the car, I burst into tears. My husband was panicked. Did my head hurt? Did we need to go to the hospital? What was wrong? I asked to please just go home. It turns out, my brain now associated public restrooms with the source of my trauma. My aneurysm ruptured while I was standing in a bathroom with my sister as we were getting ready for my niece’s bridal shower. I was now afraid of public bathrooms and it was debilitating.
I was also constantly asking why I survived. What did I do to deserve to still be here? What made me so special? It plagued my thoughts constantly. I’d go to my doctor appointments and I kept hearing variations of “do you know how lucky you are to still be alive?” I’d hear it from the nurses, the front desk team, and even the doctors. It was like a knife to the heart every time. It seemed to cement that belief that I truly shouldn’t be here. That I wasn’t worthy of surviving.
My husband suggested that I talk to someone. I knew he was right because I was a complete mess. I reached out to countless therapists trying to get an appointment. Wait times were as long as 9 months to get an appointment. I finally found a psychologist who didn’t take insurance, but could see me that week. I was willing to pay anything. I needed help and I was desperate. At my first appointment, he suggested I find a therapist who practices a therapy called EMDR to help me with PTSD. He also prescribed a medication to help me with the flashbacks that were consuming my life. We then began to dig in to the survivor’s guilt.
People didn’t understand what I was going through. I was talking to a group of friends and mentioned how I was struggling with the question of “why was I still here?” One of my friends seemed shocked and told me I was being ridiculous because if he had cheated death, as I had, he’d be celebrating. That clear dismissal of my fears was heartbreaking. I felt like I was knocked down all over again. Maybe I was broken even worse than I thought. On top of everything else I had been through, now I thought there was something wrong with me mentally and I began to withdraw because I was afraid of what people would think…even the people who were supposed to love me. I felt so alone and adrift. I was trapped in a mind I no longer understood, dealing with a body that failed me in a way I still couldn’t quite process. I bottled these feelings up. I pretended everything was normal. I told people I was “fine.” I held it together every week until I reached the sanctuary of my therapist’s office when the cracks in the dam opened like giant fissures and the fears, doubts, and tears came spilling out to swallow me into the darkness.
Therapy was the best decision I ever made. We dove into every aspect of my life so that she could understand me. And, ultimately, so I could understand myself. I felt safe for the first time in a long time. She didn’t laugh at my fears or tell me that I was ridiculous for having them. In fact, she told me everything I was going through was to be expected given what I experienced. We jumped into the EMDR therapy and I learned techniques for managing my PTSD. Techniques that I could easily replicate in public without drawing attention to myself. I’ll be honest, it hasn’t worked as effectively as I had hoped, but it did get me past my fear of bathrooms (most of the time). I do notice that when I am struggling with exhaustion or an extreme headache, the PTSD more easily controls me, versus the other way around. But I continue to work on it.
My survivor’s guilt is a bit more challenging. I still hear statements from healthcare providers that make me cringe. Nurses who call me a “miracle” and want to hug me, even though they’ve just met me. As if, somehow, my luck will rub off on them. It is painful. It is excruciating when I meet family members who have lost a loved one and I feel like I should apologize for living when their loved one was taken before they were ready. How can I justify my surviving and even thriving, when they are trapped in the grief that my family escaped? When I hear stories in the news about aneurysms, my heart stops. Recently, Grant Imahara died from a ruptured brain aneurysm. In the days leading to his death, he complained about bad headaches, neck pain, and numbness/weakness. These are all symptoms but he didn’t know. Why didn’t he get to survive? Surely he has more to offer this world than I do.
These thoughts come crashing back so easily. I can quickly drown in the darkness. My saving grace is to remember that I have dedicated myself to helping others through advocacy. I don’t understand the universe or why God saw fit to save me. I don’t know if advocacy is my destiny or if there is something else out there, waiting around the next corner. What I do know is that I do have a purpose. And for now, my purpose is to emerge from the flames carrying water for others who are consumed. The battle with my demons isn’t over. I can tell my story without sobbing, but I still have days when I am overcome with fear, anger, uncertainty, and panic. I am a work in progress. But we, as a society, have more work to do too. We cannot continue to ignore the importance of mental health. We cannot make jokes and mock those who admit they need help. We don’t dismiss people who have cancer or diabetes. We have to learn that people’s feelings are valid and we should encourage each other, support each other, and nurture each other. And we certainly shouldn’t be ashamed to do all those things for ourselves either.
I’m exhausted. Those two little words say so much and not nearly enough.
Fatigue is a major issue that a lot of brain trauma patients deal with. It isn’t the “normal” tired. It is a chronic and overwhelming exhaustion that is debilitating. One of the best analogies I’ve seen is a battery. Before the trauma, your battery could fully charge. Every night, you’d go to sleep and wake up in the morning with that battery charged for your day ahead. After the trauma, your battery no longer fully charges. It’s like a 3 year old cell phone that can only hold a 50% charge. On top of that, every activity takes more energy than before, so that battery depletes a lot quicker than it used to. That battery now runs out early in the day, unless you can recharge it. That makes doing anything a challenge. Simple things like focusing on a meeting at work will zap that battery and trigger something called neuro-fatigue. Although the battery example provides a great visual to people, my go-to is that it is a tiredness that goes deep into my bones.
Before my aneurysm, I worked in demanding and stressful jobs. I often worked extremely long hours and traveled a lot for work throughout my career. My weekends were spent either working or doing things around the house. I would spend an entire day cooking and by the time the day was done, I’d be tired, but it was manageable. It was a good tired. A tired that comes with the feeling of accomplishment. My husband and I would often go on hikes, camera gear packed, and spend a day out taking pictures and enjoying nature. Those days were tiring but my battery would always replenish.
After my rupture, I didn’t sleep. I was exhausted all the time. I told my doctors that I would only sleep for an hour at a time. They explained that fatigue was common and normal. But they also told me that I needed to sleep so that my brain could heal. They prescribed a variety of sleeping meds and one after another failed to work. I’d still only sleep for an hour at a time. The pills made me feel tired, but sleep never came. I became a zombie and continued to express concern. Eighteen months after my rupture, I went to a neurologist who specializes in sleep issues. After two sleep studies, they discovered that I cannot reach REM sleep anymore because of the damage from the rupture. My brain wasn’t healing because I could never get to a deep restorative sleep.
We finally found a treatment plan that gets me to REM sleep about 4 nights per week, so that took care of part of my exhaustion. The neuro-fatigue was still a challenge. Part of my recovery has been weekly appointments with a vestibular therapist, speech therapist, and occupational therapist. It became apparent that part of the issue was that I was still trying to live my life the same way I always had, rather than considering my new limitations. As I worked on my speech, balance, and vision issues, all three therapists had the same advice…slow down.
I struggled to understand the neuro-fatigue. I looked for causes, patterns. It never seemed to make sense. Things I did yesterday without issue, I couldn’t do today. Things as simple as baking a boxed cake mix would knock me down for 3 hours. Trying to read a book for longer than 15 minutes would trigger intense pain and wipe me out for the rest of the day. My therapists told me that I now had to break things up throughout the day. I could no longer spend the morning cleaning the house. Instead, I was told to work for 30-60 minutes at a time, depending on the task, then rest for an hour or two before starting something new. My nature is to “power through” and finish my work. It’s who I am…or was.
As a brain trauma survivor, my energy stores are depleted quickly because the brain is trying to do things on a different path. It’s like your commute to work being blocked by an accident so you take an alternate route. You aren’t familiar with that road, but you know it leads to your destination. Your brain is sucking up your energy trying to do things differently. My brain is trying to rebuild pathways that were destroyed by the rupture and the processing takes more energy and time now. When I push myself too hard, the recovery can take up to three days. I am functionally useless during this period. It starts with me slurring my speech, stumbling, and completely unable to form a coherent sentence. I will collapse into bed and sleep as much as possible. There is no cure besides rest.
Along with so many other things post-rupture, this was a new obstacle to navigate. The challenge was frustrating…it IS frustrating. I’m still learning to cope with this. It is honestly one of my constant struggles and the thing that sends me into the “why me” mode. I hate not being able to function like I used to. I hate not being able to go non-stop all day. I miss the me that used to not think about where I would be when I got tired.
The good news is, I’m learning to recognize the signs before it gets to the point of complete exhaustion. I started to notice that as my battery runs down, I become more irritable, I struggle to concentrate and focus, noise becomes more intense, and I feel “heavy.” It’s as if my blood turns to lead and my feet are encased in cement. I’ve become more in tune with my body. I now pay attention to all the cues my body shows me. At the first appearance of any of these signs, I stop what I’m doing and lie down. Well…most of the time. I still have my moments when I think I’m invincible and I keep pushing myself, but I’m learning.
Like everything on this journey, it makes me appreciate my blessings. I’m grateful to be alive to feel tired. But I’m definitely going to take a nap.
So I woke up on April 14, 2018, and was so excited that I didn’t have a headache. I couldn’t get over how bad that migraine cycle had been. It was absolutely brutal, but it was over! Now I could focus on my niece’s bridal shower. I was going to emcee the games for the event and was excited to be a part of it. I had been really nervous with how bad I had been feeling. As I was getting ready that morning, my husband and I were talking about the headache and that we were both glad that it finally broke because I had to drive 3 hours to get to the shower. I focused on getting myself ready and was so happy. After I was done, I was goofing around with SnapChat filters and just being my weird self. It was a fabulous day!
I hopped in the car and set off on my journey. As I headed toward Youngstown, I was singing along to the radio and sipping on my drink. I enjoyed road trips so I was in my element. My husband called a few times just to make sure my headache was still under control. I had told him that I could still feel it, but it was nothing like what it had been. As long as I could tolerate it, I was fine.
I finally arrived at the community center where the shower was and my sister and family were in the process of decorating. I asked what I could help with and there wasn’t much for me to do so I sat down and wrote the card out for my niece. As my sister broke away to go get ready, I told her I’d come with her and talk to her. We went into the bathroom where she set out to do her hair and makeup and I was leaning against the wall telling her a story that I thought was hilarious. Barely a few sentences into the story, my headache came back with a vengeance.
I remember looking at myself in the mirror, as I lifted my hands to my head, and I let out a piercing scream of “my head!” It felt like a hot knife pushing through the top of my skull. I was dying and I knew it. It felt like I was falling through a dark hole…collapsing into an abyss. Thirty seconds, 20 minutes, or 2 hours later, I don’t know, but I woke up on the floor of the bathroom. My sister’s face was above me as she stroked my forehead. I could see the concern on her face. I heard voices but couldn’t place them. Behind me I heard someone ask “is she still alive?” and my niece sharply respond “YES! Get out of here!” There was no mistaking the fear in her voice. I started vomiting uncontrollably, I couldn’t feel anything. I had no idea what was happening. I remember laying on the floor crying and all I could do was apologize to my niece for ruining her special day. I felt truly awful and just wanted to sink into the floor from embarrassment.
There are a lot of holes in my memory at this point. Things faded in and out, I have pieces of things but nothing truly substantial. I fell in and out of consciousness. The medics arrived and I was loaded onto the gurney and into the ambulance. I remember my 79-year old mother climbing into the ambulance with me and seeing the fear on her face. The fear of seeing her youngest child dangerously sick. I heard someone else ask if mom was coming with me and my mom firmly saying “she is not going alone!” I don’t remember the ambulance ride. I don’t know if I was conscious or not. I remember seeing ceiling lights flashing overhead through my closed eyes as I was wheeled into the ER. I opened my eyes and my dad was staring at me. I began to tear up and asked what he was doing there. I knew he didn’t drive much anymore, but there he was. Why was he there? I just had a headache! He just looked at me the way a dad looks at his baby and whispered “I would have driven as long as it took to get to you” and he squeezed my hand and wiped away the falling tears.
That is the last thing I remember.
I’ve been told that I was in and out of consciousness after that. I had conversations. I even stood up and walked to the bathroom on my own. None of that exists in my brain anymore. It is all gone. I’ve asked my doctors. I’ve asked my therapists. They’ve all told me not to search for those memories. The brain is like a computer hard drive. It is holding all of your knowledge, memories, skills. My hard drive has been damaged irreparably and those memories are permanently gone. So much of me wants the details, but I’ve been told the trauma would be unbearable, so I push aside the gnawing questions and curiosity in exchange for some level of sanity.
At some point, I was transferred to a different hospital that could handle my trauma. I began having seizures and stopped breathing. I was intubated and fell into a coma. I would later learn that my brain had been bleeding for 4.5 weeks. I had suffered a ruptured brain aneurysm, a subarachnoid hemorrhage, a subdural hematoma, and due to the amount of blood and swelling of my brain, my brain had a 7.5mm midline shift to the left. The prognosis was grim. My husband, who had driven the 3 hours to get to me, arrived at the hospital thinking that I was just dealing with a migraine. He had no idea that every peace we knew would soon be ripped away. The hospital staff and police confronted him. How had I sustained this damage to my brain? Had I fallen? Did he hit me? My family defended him. Everything had turned into chaos. My family was told there was only a 6% chance that I would live and if I managed to survive, there was little chance that I would be functional. My life was essentially over as we knew it.
Looking back, I cannot imagine what my family was going through. I was laying unresponsive in a hospital bed with tubes and wires coming out of my body at every angle. A machine was breathing for me. And no one had any clue if I would ever wake up. My husband was given a choice of which procedure he wanted the doctor to do. The statistics were slightly better for one over the other, but the procedures were totally different. I was taken into surgery to attempt to coil the ruptured aneurysm. The surgeon was hopeful to be able to do the coil procedure because it would be less invasive. They would go through an artery in my groin and snake their way up to my brain and implant platinum coils into the aneurysm to stop the bleeding and hopefully prevent it from growing and getting any blood flow in the future. If my arteries were too twisted to get through, they would need to crack open my skull and clip it in a procedure known as a craniotomy. Thankfully, the coil procedure was successful, but the waiting continued. I had made it through the surgery, but there was still no guarantees. There was no guarantee that I would wake up or what I would be like if I did.
Four days later, I finally woke up. It was at that point I found out the basic details of what had happened. I’m not sure how I reacted or what questions I had as I still have no memory of that. I do remember laying alone in my room in ICU that night and processing what I had learned that day. Earlier in the day, I had told my husband that the only thing that I had remembered was hearing the words “be still” while I was in a coma. I assume that I had some awareness while unconscious and a nurse was telling me to be still while they did their exams on me. So as I was laying there pondering my new reality in the quiet of the night, I heard, very clearly “be still and know that I am God” whispered right into my ear. I whipped around to see who was there. No one was in my room. My movement must have alerted a nurse because she came rushing in to check on me and ask if I was okay. I asked if anyone else was in the room and she told me it was just the two of us. I knew I had been awake. This wasn’t a dream. In that moment, there was an unbelievable calm that washed over me. I couldn’t explain it, I had just had brain surgery. I had nearly died. And yet, there I was…calm. The nurse was done with her checks and said goodnight as she lowered my bed and she left my room, leaving me alone again. I settled back into my pillow and just let the tears flow. I knew I’d be okay. No matter what battles I still needed to fight, I knew I’d be okay.
